Blood Levels down

[heartofwisdom]

I had a transfusion (2 units) 2 weeks ago. My hematocrit levels went up from 27 to 36 and hemoglobin went from 9 to 12.

As of Wednesday levels are down to hematocrit 31 and hemoglobin 11. Cardiologist wants another transfusion when I get to 30 or 10. My heart is bouncing all over the place throwing PVCs. Blood volume is 76.

I'm still craving ice and exhausted.

I am irritated. I went through this in March. I went to hospital got 2 units of blood and even though I was still loosing blood and levels falling the released me without doing anything. I had to go back a week later and get 4 more units. Thats all they did. Never found where the blood was coming from. Now we know I have crohns (or think I do its still a guess-- I have some bleeding ulcers in the small intestine)

This is insane. We should be doing something to stop the bleeding. The Gi thought the predizon would help but obviously it is not helping.

I see the cardiologist Monday morning and GI doctor Mon afternoon.

What do you suggest I say to the GI doctor? What do they try after steroids?

Last appt GI mentioned seeing a general surgeon. I don't want general surgeon. I want someone that deals with crohns and surgery as a last resort.

I don't want more blood I want to be fixed! I am tired of guessing and wondering.

Thanks for letting me vent.

 

[dayng1016]

I'm sorry to hear your having a tough time with everything right now. Hopefully your docs will be able to come up with something to help. I agree about doing surgery as a last resort. My first GI, once he diagnosed me with Crohn's the first and only thing he recommended was surgery. He told me no meds would help until I did the surgery, so I did not go back to him and found another doctor. The doctor I am seeing now, will not do surgery unless that is the last possible option for me.

If I remember correctly, you are in TN? I am also and if you would like you can pm me and I'll let you know the doctor I am seeing (Nashville). I really hope you are able to get some relief soon.

Good Luck!

 

[LittleJon71]

Hey heart,

Yeah, isnt it the guessing that is the worst? You would think that we/they/all of us would know more about what is happening inside us by now. Instead what we get is, "take some of this 60 year old medicine (prednisone), which we dont really know that much about."

Nice!
Hang in there - let's hope for some breakthroughs in 2009.

Love
LittleJon

 

[katiesue1506]

They gave you a transfusion at 9? I'm just confused because I hover in the 9s and 10s and have never been offered a transfusion (don't really want one) but I just wondered if you asked or if they told you to get one. Is it hard on the heart to have this low count? My pulse is 90 and BP is 105/59 as of today when I checked.

 

[heartofwisdom]

Yes I got a transfusion at 9 becasue I have a heart condition. I had open heart surgery last year and then stens put in a few months later.

As soon as I get low I start throwing PVCs. My heart goes crazy at 10 trying to keep up. I get transfused so my heart doesn't have to work as hard.

 

[katiesue1506]

Oh ok... that would make sense. I was a bit worried tho because I'm alwaysin the 9s and 10s and didn't know that it can be hard on the heart. I guess I couldve figured that though